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Phone
01865 287898
Biography
Prof. Jane Kaye DPhil, LLB, Grad Dip Leg, BA is the Director of the Centre for Law, Health and Emerging Technologies (HeLEX) in the Faculty of Law at the University of Oxford and also leads the Centre for Health, Law and Emerging Technologies at Melbourne Law School, University of Melbourne, Australia, where she has a fractional appointment. She obtained her degrees from the Australian National University (BA); University of Melbourne (LLB); and University of Oxford (DPhil). She was admitted to practice as a solicitor/barrister in 1997. She is on a number of international expert committees and scientific advisory boards and has been on the Nuffield Council Bioethics Working Group on Biodata and Rapporteur for the EC Expert Report, Biobanks for Europe - A Challenge for Governance, June 2012. She is also on the editorial boards of Law, Innovation and Technology, the Journal of Law, Information and Science, Genomic Medicine, New Genetics & Society and Life Sciences, Society and Policy. Her team are leading on the Dynamic Consent project. Her research focuses on the relationships between law, ethics and the emerging technologies in health. The main focus of her research is on genomics with an emphasis on biobanks, privacy, data-sharing frameworks, global governance and translational research. Her full profile is available on the HeLEX website.
Publications
Featured publications
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J Kaye, Governing biobanks (Hart 2012) -
J Kaye, A Phillips, H Gowans and N Shah, 'International Direct-to-Participant (DTP) Genomic Research: The United Kingdom Responses (Country Reports)' (2019) 47 The Journal of Law, Medicine & Ethics 683 DOI: 10.1177/1073110519897736J Kaye, 'ELSI 2.0 for genomics and society' (2013) Science DOI: 10.1126/science.1218015Journal Article (53)
J Bell, S Aidinlis, H Smith and J Kaye, 'Balancing data subjects' rights and public interest research: Examining the interplay between UK Law, EU Human Rights Law and the GDPR' (2019) 5 European Data Protection Law Review 43 DOI: 10.21552/edpl/2019/1/8Id: 11823D Nicol, L Eckstein, HB Bentzen and J Kaye and others, 'Consent insufficient for data release' (2019) 364 Science 445 DOI: 10.1126/science.aax0892Id: 11849J Kaye, A Phillips, H Gowans and N Shah, 'International Direct-to-Participant (DTP) Genomic Research: The United Kingdom Responses (Country Reports)' (2019) 47 The Journal of Law, Medicine & Ethics 683 DOI: 10.1177/1073110519897736Id: 11971J Bell, S E Wallace, M Mourby and J Kaye, 'Lawful disclosure of administrative data for research purposes in the UK' (2019) 2 Journal of Data Protection & Privacy Id: 11973N Shah, V Coathup, H Teare and J Kaye and others, 'Motivations for data sharing - views of research participants from four European countries: a DIRECT study' (2019) 27 European Journal of Human Genetics 721 DOI: 10.1038/s41431-019-0344-2Id: 11910M Mourby, E Mackey, M Elliot and J Kaye and others, 'Are 'pseudonymised' data always personal data? Implications of the GDPR for administrative data research in the UK' (2018) 34 Computer Law & Security Review: The International Journal of Technology Law and Practice 222 DOI: 10.1016/j.clsr.2018.01.002Id: 11817M Prictor, H Teare, J Bell and J Kaye, 'Consent for data processing under the General Data Protection Regulation: Could ‘dynamic consent’ be a useful tool for researchers?' (2018) 3 SSRN Electronic Journal DOI: 10.2139/ssrn.3222394Id: 11845J Kaye, SF Terry and E Jeungst and others, 'Including all voices in international data-sharing governance' (2018) 12 Human Genomics DOI: 10.1186/s40246-018-0143-9Id: 11891Budin-Ljosne, H Teare, J Kaye and J Kaye and others, 'Dynamic Consent: a potential solution to some of the challenges of modern biomedical research' (2017) 18 BMC Medical Ethics 4 DOI: 10.1186/s12910-016-0162-9Id: 11866C Mitchell, C Ploem, V Chico and J Kaye and others, 'Exploring the potential duty of care in clinical genomics under UK law' (2017) 17 Med Law Int 158 DOI: 10.1177/0968533217721966Id: 11872D Sipp, Tcaulfield, J Kaye and J Kaye, 'Marketing of unproven stem cell-based interventions: A call to action' (2017) Science Translational Medicine 1 DOI: 10.1126/scitranslmed.aag0426Id: 11903V Coathup, N Hamakawa, T Finlay and J Kaye, 'Participant-centric initiatives and medical research: Scoping review protocol' (2017) 6 JMIR Res Protoc DOI: 10.2196/resprot.7407Id: 11914NAA Giesbertz, K Melham, J Kaye and J Kaye, 'Personalized assent for pediatric biobanks' (2017) 12 BMC Medical Ethics 59 Id: 11919M F. Bin Abdul Azi, M Morrison and J Kaye, 'Regulating human stem cell research and therapy in low- and middle-income countries: Malaysian perspectives' (2017) New Genetics and Society DOI: 10.1080/14636778.2017.1415137Id: 11927M Morrison, J Bell, C George and J Kaye, 'The European General Data Protection Regulation: Challenges and considerations for iPSC researchers and biobanks' (2017) 12 Regenerative Medicine DOI: 10.2217/rme-2017-0068Id: 11936H Teare, J Hogg and J Kaye and others, 'The RUDY study: using digital technologies to enable a research partnership' (2017) 25 European Journal of Human Genetics 816 DOI: 10.1038/ejhg.2017.57Id: 11944J Kaye, L Briceño Moraia, C Mitchell and J Bell, 'Access governance for biobanks: The case of the BioSHaRE-EU cohorts' (2016) 14 Biopreservation and Biobank 201 DOI: 10.1089/bio.2015.0124Id: 11812J Bell, M Ancillotti, V Coathup and J Kaye and others, 'Challenges and opportunities for ELSI Early Career Researchers' (2016) 17 BMC Medical Ethics DOI: 10.1186/s12910-016-0121-5Id: 11837JP Woolley, ML McGowan, H Teare and J Kaye and others, 'Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives' (2016) 17 BMC Medical Ethics 33 DOI: 10.1186/s12910-016-0117-1Id: 11840J Kaye, L Briceño Moraia, L Curren and J Bell, 'Consent for biobanking: The legal frameworks of countries in the BioSHaRE-EU project' (2016) 14 Biopreserv ation and Biobank 195 DOI: 10.1089/bio.2015.0123Id: 11842D Chalmers, D Nicol, J Kaye and J Bell, 'Has the biobank bubble burst? Withstanding the challenges for sustainable biobanking in the digital era' (2016) 17 BMC Medical Ethics 39 DOI: 10.1186/s12910-016-0124-2Id: 11885J Kaye and The 1000 Genome Project Consortium, 'A global reference for human gentic variation' (2015) 526 Nature DOI: 10.1038/nature15393Id: 11805J Kaye and The UK10K Consortium, 'Improved imputation of low-frequency and rare variants using the UK10K haplotype reference panel' (2015) 6 Nature Communications DOI: 10.1038/ncomms9111Id: 11887J Kaye, D Muddyman, C Smee and J Bell, 'Pop-up' governance: Developing internal governance frameworks for consortia: The example of UK10K' (2015) Life Sciences, Society and Policy 10 DOI: 10.1186/s40504-015-0028-9Id: 11921J Kaye and The UK10K Consortium, 'The UK10K project identifies rare variants in health and disease' (2015) 526 Nature DOI: 10.1038/nature14962Id: 11947J Kaye and The UK10K Consortium, 'Truncation of POC1A associated with short stature and extreme insulin resistance' (2015) 55 Journal of Molecular Endocrinology DOI: 10.1530/jme-15-0090Id: 11955J Kaye and The UK10K Consortium, 'Whole-genome sequence-based analysis of thyroid function' (2015) 6 Nature Communications DOI: 10.1038/ncomms6681Id: 11963J Kaye and The UK10K Consortium, 'A rare variant in APOC3 is associated with plasma triglyceride and VLDL levels in Europeans' (2014) Nature Communications DOI: 10.1038/ncomms5871Id: 11809J Kaye, 'Data sharing policy design for consortia: Challenges for sustainability' (2014) Genome Medicine DOI: 10.1186/gm523Id: 11858J Kaye, EA Whitley, D Lund and M Morrison, 'Dynamic consent: A patient interface for twenty-first century research networks' (2014) 23 European Journal of Human Genetics DOI: 10.1038/ejhg.2014.71Id: 11863J Kaye and The 1000 Genome Project Consortium, 'Integrating sequence and array data to create an improved 1000 Genomes Project haplotype refence panel' (2014) Nature Communications DOI: 10.1038/ncomms4934Id: 11895J Kaye, 'Managing clinically significant findings in research: The UK10K example' (2014) European Journal of Human Genetics DOI: 10.1038/ejhg.2013.290Id: 11901K Melham, LB Moraia, C Mitchell and J Kaye, 'The evolution of withdrawal: negotiating research relationships in biobanking' (2014) 10 Life Sciences, Society and Policy DOI: 10.1186/s40504-014-0016-5Id: 11938J Kaye, N Kanellopoulou, N Hawkins and H Gowans, 'Can I access my personal genome? The current legal position in the UK' (2013) 22 Medical Law Review 64 DOI: 10.1093/medlaw/fwt027Id: 11964J Kaye, 'ELSI 2.0 for genomics and society' (2013) Science DOI: 10.1126/science.1218015Id: 11867J Kaye and The 1000 Genome Project Consortium, 'An integrated map of genetic variation from 1,092 human genomes' (2012) 491 Nature DOI: 10.1038/nature11632Id: 11813J Kaye, 'Embedding biobanks as tools for personalised medicine' (2012) Norsk Epidemiologi DOI: 10.5324/nje.v21i2.1490Id: 11868J Kaye, 'From patients to partners: Participant-centric initiatives in biomedical research' (2012) Nature Reviews Genetics DOI: 10.1038/nrg3218Id: 11876J Kaye, 'The tension between data sharing and and the protection of privacy in genomics research' (2012) Annual Review of Genomics and Human Genetics DOI: 10.1146/annurev-genom-082410-101454Id: 11946P Boddington, L Curren, J Kaye and J Kaye, 'Consent forms in genomics: The difference between law and practice' (2011) 18 European Journal of Health Law 329 DOI: 10.1163/157180911X598744Id: 11848J Kaye, 'From single biobanks to international networks: Developing e-governance' (2011) Human Genetics Id: 11877J Kaye and The 1000 Genome Project Consortium, 'A map of human genome variations from population-scale sequencing' (2010) Nature DOI: 10.1038/nature09534Id: 11807J Kaye, 'Ethhical implications of the use of whole genome methods in medical research' (2010) European Journal of Human Genetics DOI: 10.1038/ejhg.2009.191Id: 11869L Curren, J Kaye, H Gowans and P Boddington, 'Identifiability, Genomics and UK Data Protection Law' (2010) 17 Eurpean Journal of Health Law 329 Id: 11969J Kaye, 'Data sharing in genomics - re-shaping scientific practice' (2009) Nature Reviews Genetics DOI: 10.1038/nrg2573Id: 11857J Kaye and Toronto Int Data Release Workshop, 'Prepublication data sharing' (2009) 461 Nature DOI: 10.1038/461168aId: 11922J Kaye, 'Mapping the regulatory space for genetic databases and biobanks in England and Wales' (2008) Medical Law International Id: 11902J Kaye, 'The regulation of direct-to-consumer genetic tests' (2008) Human Molecular Genetics DOI: 10.1093/hmg/ddn253Id: 11942J Kaye, 'Patents and translational research in genomics' (2007) Nature Biotechnology DOI: 10.1038/nbt0707-739Id: 11917J Kaye, 'Do we need a uniform regulatory system for biobanks across Europe?' (2006) European Journal of Human Genetics DOI: 10.1038/sj.ejhg.5201530Id: 11860J Kaye, 'Genetic research on the UK population - do new principles need to be developed?' (2001) Trends in Biotechnology Id: 11880J Kaye, 'Report may lead to population collection by the back door' (2001) 323 British Medical Journal DOI: 10.1136/bmj.323.7313.632Id: 11928J Kaye, 'Safeguards for research using large scale DNA collections' (2000) British Medical Journal Id: 11929Report (1)
S Coy, H Teare, S Aidinlis and J Kaye, Data Policy Models for Funding Bodies (Wellcome Trust 2018) Id: 11855Chapter (3)
J Kaye, J Bell and M Prictor, 'Trends and challenges in biobanking, tensions and and traumas in health law' in I Freckelton and K Petersen (eds), Tensions and Traumas in Health Law (The Federation Press 2017) Id: 11954N Hawkins, N Kanellopoulou, J Kaye and J Kaye and others, 'Ownership of biomedical information in biobanks' in Pascuzzi G | Izzo U | Mailotti M. (ed), Comparative Issues in the Governance of Research Biobanks (Springer 2013) DOI: 10.1007/978-3-642-33116-9-5Id: 11912J Kaye, 'Biobanking networks - What are the governance challenges?' in (ed), Principles and practice in biobank governance (Stanger 2009) Id: 11831Other (3)
C Johnston, J Kaye and J Bell, 'Who owns your DNA?' (2017) Pursuit (Melbourne University) Legal Affairs Id: 11962J Kaye, J Bell and L Briceño Moraia, 'Biobank Report: United Kingdom' (2016) 44 J Law Med Ethics 96 DOI: 10.1177/1073110516644202Id: 11830J Kaye, 'The use of biological sample collections and personal medical information in human genetics reasearch: Issue for social science research and public policy' (1999) Wellcome Trust Id: 11948Book (2)
J Kaye, Governing biobanks (Hart 2012) Id: 11881J Kaye, Principles and practice in biobank governance (Stanger 2009) Id: 11923Research programmes
Research projects
- AIDE Project: Artificial Intelligence in Healthcare for All: Towards Designing a Platform for Sustainable Stakeholder Engagement
- BioGOV: Governing Biomodification in the Life Sciences
- Biomodifying Technologies
- DIRECT
- Dynamic Consent
- Embedding Biobanks as Tools for Translational Research
- Governance of Health Data in Cyberspace
Research Interests
Empirical research; governance; privacy and data protection; public engagement.
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